Alanna VarshneyBrain Tumor Type
CraniopharyngiomaDate of Diagnosis
29/4/2018Age Group (If you are a caregiver/family member please check Caregiver/Family Member)
Creative Writing Artist Statement (include type of art, techniques & materials used, what it means to you)
I started writing poetry in an MRI. We went through them every three months for a long time. The pulsations broke into my soul and I found it painful to sit, waiting and useless, doing nothing, while a machine looked into my daughter's brain to guide us in answering the question, what next?
I started scribbling in pencil on the back of a magazine I'd brought in as a distraction. From then on I would bring paper and pen and soon I was untangling my own feelings as a parent by writing poetry about my experience of what was happening to my little girl. It has become a way to understand and unburden myself.
This is the first time I am sharing one of my poems and I'm pleased to be sharing it in a community of people who are most likely to relate to the feelings I've tried to capture - the feelings of pain and hope, always side-by-side as if they were meant to co-exist in this crazy brain tumour life.Bio (include your age, tumor type and date of diagnosis)
My little girl has a craniopharyngioma, though our path has not been straight (they rarely are!). She was diagnosed in April 2018, five days before her sixth birthday, with a brain tumour, which was originally thought to possibly be a craniopharyngioma. However, after further testing, the diagnosis was a pilocytic astrocytoma and, after having a port surgically placed, she started on an 18 month protocol of chemo.
In September 2019, 15 months after we started chemo, and many MRIs later, she lost some of her vision and chemo was halted in favour of a craniotomy. The tissue from the October 2019 craniotomy revealed the tumour was in fact a craniopharyngioma.
As soon as she’d recovered enough from the second craniotomy, we had to move away for the next stage of the correct treatment, proton beam therapy. By the time proton finished in March 2020, the world had shut down. We moved home and stayed there, afraid of anything that could take away the child we had spent the previous two years fighting like hell to keep.
In December 2022 a new tumour was found on her MRI. It was removed last month, in March 2023, and tested as a craniopharyngioma.
This May, my little girl turns 11. While she has plenty of things that make her life more challenging than her peers, she makes me proud every day with her creativity, her attitude and her insight; some despite what she has been through and some because of it. No matter what comes next I will do everything I can to help her build a fulfilling life. I will continue to water my little seed and watch her grow.